fear and loathing afib

[Scotf]

so glad to have found this forum. I have had persistent afib for at least 10 years which has contributed to a couple of strokes, a multitude of TIA’s, heart attacks and an anxiety disorder which destroyed my mental health. In the last year I have had a pace maker installed. To treat my afib I had an ablation and two cardio versions. None of which proved effective.

In November of 23 my ablation almost killed me. Immediately after the ablation my blood pressure went to over 200/140 and remain elevated for two months. No medications helped except for temporary relief morphine and a heparin drip during multiple ER visits. The sickness I experienced and the ever present spector of sudden death destroyed all hope.

In January of this year I had my second cardio version which showed promise. However within a month I was back in persistent afib.

I am back on Sotalol 120mgs twice a day which makes me sicker than shit. I get all the side effects in abundance. The only time I feel functional is when the medicine wares off but that only means it’s time for another dose and within two hours I am almost completely incapacitated.

So damn if I do and damned if I don’t. My afib experience without Sotalol isn’t any better. So just don’t know.

My cardiologist wants to perform another ablation. Nothing I can think of fills me with more fear than facing another ablation.

I had been on a 60 mg dose of Sotalol for 5 years and I was not aware of any side effects other than the two heart attacks, one stroke and multiple TIA’s so I am not sure of any benefits of the drug other than I am still alive.

I have read of this forum of some who have had long term use of Sotalol or other meds as opposed to multiple procedures. I just so afraid of another ablation I feel the need to make a decision about my life and choosing the plan for Prolonging the quality of life thru life style or medical treatment.

I make all the other positive lifestyle choices except I do like cigars. So it’s just this damn afib that is making it difficult to be immortal 😂

Fear and loathing with Afib.

[Rainfern]

Welcome to the forum Scotf

You’ll find so many different approaches and decisions regarding medications and/or ablation here. Ablation is not for everyone and it sounds like you need time to explore what your choices are. You’ve certainly had a rough journey! There is no one size fits all, but we’re all similar in seeking to make informed choices. You’ll find a wealth of information and wisdom here and on the AF Association website. This forum helped me ask all the right questions of my electrophysiologist, gave me courage when I felt like life was on a downward slope, and opened up the choices available to me. It’s good to have a relationship with your EP where you’re working out the way ahead in partnership. If you don’t have this it may be time for a change or second opinion?

[Scotf in reply to Rainfern]

Thanks learning to as the right questions is something I need to learn. Just depending upon my cardiologist to be forthcoming has not proven to Be helpful.

[mjames1]

Very sorry what you've been going through. I see you're from the United States. Many there have had success with the Wolf Mini Maze (WMM) when medication and multiple ablations have not succeeded. Even when in long-term persistent a fibrillation.

It might be worth a consultation with Dr. Randall Wolf. His located in Houston, however, he will do a video consultation at a very reasonable rate, so you don't have to do any traveling until you make up your mind.

Jim

[Scotf in reply to mjames1]

As a disabled vet I am extremely grateful to be under the VA’s care but it can be complicated getting outside care but I can do some research and ask questions.

[mav7 in reply to Scotf]

At 66 you have Medicare, correct ? Consult with the VA rep about outside care.

Not sure you would be a candidate for the minimaze due to your previous heart attacks, strokes, TIAs, and ablation complications. May want to give his office a call, just google his name for contact info. Dr Randall Wolf

Also would ask for an echocardiogram (if not done recently) to present an evaluation of your heart. Would also be needed for further therapy including the minimaze.

[kocoach in reply to Scotf]

Hey Scott, I am 77 years old, live in the US and am also a disabled vet with PAF for 32+ years now and have been treated at the VA for 50 years by them. Do you have an EP? If not tell them you want one, cardiologists are OK but EPs are the experts in this field. If you don't feel comfortable with the VA DRs. you can always ask to be seen by an outside DR. and they will pay for everything, the name of the payer is tri-west. I've had a heart attack also and am being seen by an outside DR. for severe allergies and have never paid a cent. What I have found out with the VA is they want us to still fight for everything. If you get no satisfaction dealing with them you can always call the Veterans 24 hour White House Hotline and they will get things taken care of ASAP, I know I've used them many times. Good Luck and keep fighting!!

[Jill13]

so sorry to hear you have had such a bad time

Have you talked to your cardiologist about a change of drugs? I am in permanent AFib but don’t feel it now as the drugs I am on now work well to keep it under control. I am on Digoxin, Dilitiazem and Eliquis but it took quite a lot of trial and error to find the right combination

I didn’t try ablations but cardiovetsions didn’t work for me either. Hope you find the right solution for you

[Ppiman]

I was sorry to read your story and of your suffering. Dear me. The Wolf Mini Maze operation came to mind as soon as I saw you were in the USA.

Steve

[Buffafly]

Has your cardiologist mentioned ablation of the AV node between the atria and the ventricles? You would then be pacemaker dependent but your ventricles would beat steadily and you shouldn’t be very conscious of what your atria are doing. Maybe you would be considered too young for that, in which case the MM would be your best option if you could get it.

[Polski]

We asume you are taking an anticoagulant?

[Ersilia2]

Sorry you are having a hard time with your Afib, Find a new Cardiologist, there’s lots of meds out there, Doctors all have different opinions. I just found a new Cardio,and I’am so happy to be under his care. Hope things get better for you.

[jaammestaylor]

I’d look into a Wolf Minimaze possibly